Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 YOU GO GIRL!!!!! We all should be so lucky to have someone on our side like you, who is willing to go to the ends of the earth to get help for a loved one! You have my admiration, and you and Dylan both have my prayers! Love Lana " 'Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.' " Dr. Suess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 YOU GO GIRL!!!!! We all should be so lucky to have someone on our side like you, who is willing to go to the ends of the earth to get help for a loved one! You have my admiration, and you and Dylan both have my prayers! Love Lana " 'Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.' " Dr. Suess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 YOU GO GIRL!!!!! We all should be so lucky to have someone on our side like you, who is willing to go to the ends of the earth to get help for a loved one! You have my admiration, and you and Dylan both have my prayers! Love Lana " 'Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.' " Dr. Suess Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 I have had enough and I am fighting mad. This passing my child around like a hand me down nobody wants, is over. I swear if something doesn't come of tomorrows appointment s--t will hit the fan. I thought I had a half hour block with the Dr tomorrow. Now I find out I have an hour. Great, I'll need it. Talk time. Just me and her. Dylan is not going. I have a list of discussion that is very long, and we will talk. Not about one or two issues but all. He needs a therapeutic bed, OT to come to the house to find ways to make him more functional at home.The electric wheel chair? Well Sept she had the letter in her hands and has not signed it. The wheel chair Co. has called her 5 times. He needs the chair. MRI results, blood in stool, She must call the NIH to get him in. I emailed them and they denied him. She can get him in with one phone call. DO IT! I want an ortho to read all his x-rays and MRIs, not just a radiologist. I've been fighting for 6 months to get him in to Cleveland Clinic for the MRI in movement. CALL! She says the insurance is bugging her. I don't care. They haven't seen anything yet! This child needs help! Boston Children's inpatient for pain management 3 months the pain Dr has talked about it. DO IT. They have a 6 month waiting list. He's 17 next month, what are we waiting for? CALL! I just might be looking for a new primary tomorrow. This child is not disposable! And I'm not taking it any more! Wish me luck. Cindy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Hi Cindy, I have been in similar situations while looking for appropriate care for my boys and have some idea about how frustrated you must feel. I learned to prepare a written list before the appointment. In reality I was not always able to get through all the items on my list so I tried to prioritize the most important issues and see which things could be grouped together. I also ook someone else with me to meetings or appointments when I knew that emotions could run high. When I am upset I sometimes miss the details or misinterpret responses so the person I bring helps to keep me grounded. If there are things your doc can't do for you (in Ontario some paperwork can only be completed by an OT) get her tell you so that you can find the right people. I hope that you have some positive progress from tomorrow's meeting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Hi Cindy, I have been in similar situations while looking for appropriate care for my boys and have some idea about how frustrated you must feel. I learned to prepare a written list before the appointment. In reality I was not always able to get through all the items on my list so I tried to prioritize the most important issues and see which things could be grouped together. I also ook someone else with me to meetings or appointments when I knew that emotions could run high. When I am upset I sometimes miss the details or misinterpret responses so the person I bring helps to keep me grounded. If there are things your doc can't do for you (in Ontario some paperwork can only be completed by an OT) get her tell you so that you can find the right people. I hope that you have some positive progress from tomorrow's meeting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Hi Cindy, I have been in similar situations while looking for appropriate care for my boys and have some idea about how frustrated you must feel. I learned to prepare a written list before the appointment. In reality I was not always able to get through all the items on my list so I tried to prioritize the most important issues and see which things could be grouped together. I also ook someone else with me to meetings or appointments when I knew that emotions could run high. When I am upset I sometimes miss the details or misinterpret responses so the person I bring helps to keep me grounded. If there are things your doc can't do for you (in Ontario some paperwork can only be completed by an OT) get her tell you so that you can find the right people. I hope that you have some positive progress from tomorrow's meeting. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Thank you , But I have to do this alone tomorrow, and I am as ready as I can be. I have my list and it is in order of importance. I won't yell, but I expect to cry. I don't care. My frustration is at it's max! I have had enough! My child needs help. Cindy C. Re: I have my battle gear on! Hi Cindy, I learned to prepare a written list before the appointment. In reality I was not always able to get through all the items on my list so I tried to prioritize the most important issues and see which things could be grouped together. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Amen Cindy! Give em Heck ! I have my battle gear on! I have had enough and I am fighting mad. This passing my child around like a hand me down nobody wants, is over. I swear if something doesn't come of tomorrows appointment s--t will hit the fan. I thought I had a half hour block with the Dr tomorrow. Now I find out I have an hour. Great, I'll need it. Talk time. Just me and her. Dylan is not going. I have a list of discussion that is very long, and we will talk. Not about one or two issues but all. He needs a therapeutic bed, OT to come to the house to find ways to make him more functional at home.The electric wheel chair? Well Sept she had the letter in her hands and has not signed it. The wheel chair Co. has called her 5 times. He needs the chair. MRI results, blood in stool, She must call the NIH to get him in. I emailed them and they denied him. She can get him in with one phone call. DO IT! I want an ortho to read all his x-rays and MRIs, not just a radiologist. I've been fighting for 6 months to get him in to Cleveland Clinic for the MRI in movement. CALL! She says the insurance is bugging her. I don't care. They haven't seen anything yet! This child needs help! Boston Children's inpatient for pain management 3 months the pain Dr has talked about it. DO IT. They have a 6 month waiting list. He's 17 next month, what are we waiting for? CALL! I just might be looking for a new primary tomorrow. This child is not disposable! And I'm not taking it any more! Wish me luck. Cindy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Amen Cindy! Give em Heck ! I have my battle gear on! I have had enough and I am fighting mad. This passing my child around like a hand me down nobody wants, is over. I swear if something doesn't come of tomorrows appointment s--t will hit the fan. I thought I had a half hour block with the Dr tomorrow. Now I find out I have an hour. Great, I'll need it. Talk time. Just me and her. Dylan is not going. I have a list of discussion that is very long, and we will talk. Not about one or two issues but all. He needs a therapeutic bed, OT to come to the house to find ways to make him more functional at home.The electric wheel chair? Well Sept she had the letter in her hands and has not signed it. The wheel chair Co. has called her 5 times. He needs the chair. MRI results, blood in stool, She must call the NIH to get him in. I emailed them and they denied him. She can get him in with one phone call. DO IT! I want an ortho to read all his x-rays and MRIs, not just a radiologist. I've been fighting for 6 months to get him in to Cleveland Clinic for the MRI in movement. CALL! She says the insurance is bugging her. I don't care. They haven't seen anything yet! This child needs help! Boston Children's inpatient for pain management 3 months the pain Dr has talked about it. DO IT. They have a 6 month waiting list. He's 17 next month, what are we waiting for? CALL! I just might be looking for a new primary tomorrow. This child is not disposable! And I'm not taking it any more! Wish me luck. Cindy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Amen Cindy! Give em Heck ! I have my battle gear on! I have had enough and I am fighting mad. This passing my child around like a hand me down nobody wants, is over. I swear if something doesn't come of tomorrows appointment s--t will hit the fan. I thought I had a half hour block with the Dr tomorrow. Now I find out I have an hour. Great, I'll need it. Talk time. Just me and her. Dylan is not going. I have a list of discussion that is very long, and we will talk. Not about one or two issues but all. He needs a therapeutic bed, OT to come to the house to find ways to make him more functional at home.The electric wheel chair? Well Sept she had the letter in her hands and has not signed it. The wheel chair Co. has called her 5 times. He needs the chair. MRI results, blood in stool, She must call the NIH to get him in. I emailed them and they denied him. She can get him in with one phone call. DO IT! I want an ortho to read all his x-rays and MRIs, not just a radiologist. I've been fighting for 6 months to get him in to Cleveland Clinic for the MRI in movement. CALL! She says the insurance is bugging her. I don't care. They haven't seen anything yet! This child needs help! Boston Children's inpatient for pain management 3 months the pain Dr has talked about it. DO IT. They have a 6 month waiting list. He's 17 next month, what are we waiting for? CALL! I just might be looking for a new primary tomorrow. This child is not disposable! And I'm not taking it any more! Wish me luck. Cindy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Cindy -- Dylan is so lucky to have you -- give it to them!!!!!!!!! Best of luck -- Patti I have my battle gear on! I have had enough and I am fighting mad. This passing my child around like a hand me down nobody wants, is over. I swear if something doesn't come of tomorrows appointment s--t will hit the fan. I thought I had a half hour block with the Dr tomorrow. Now I find out I have an hour. Great, I'll need it. Talk time. Just me and her. Dylan is not going. I have a list of discussion that is very long, and we will talk. Not about one or two issues but all. He needs a therapeutic bed, OT to come to the house to find ways to make him more functional at home.The electric wheel chair? Well Sept she had the letter in her hands and has not signed it. The wheel chair Co. has called her 5 times. He needs the chair. MRI results, blood in stool, She must call the NIH to get him in. I emailed them and they denied him. She can get him in with one phone call. DO IT! I want an ortho to read all his x-rays and MRIs, not just a radiologist. I've been fighting for 6 months to get him in to Cleveland Clinic for the MRI in movement. CALL! She says the insurance is bugging her. I don't care. They haven't seen anything yet! This child needs help! Boston Children's inpatient for pain management 3 months the pain Dr has talked about it. DO IT. They have a 6 month waiting list. He's 17 next month, what are we waiting for? CALL! I just might be looking for a new primary tomorrow. This child is not disposable! And I'm not taking it any more! Wish me luck. Cindy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Cindy -- Dylan is so lucky to have you -- give it to them!!!!!!!!! Best of luck -- Patti I have my battle gear on! I have had enough and I am fighting mad. This passing my child around like a hand me down nobody wants, is over. I swear if something doesn't come of tomorrows appointment s--t will hit the fan. I thought I had a half hour block with the Dr tomorrow. Now I find out I have an hour. Great, I'll need it. Talk time. Just me and her. Dylan is not going. I have a list of discussion that is very long, and we will talk. Not about one or two issues but all. He needs a therapeutic bed, OT to come to the house to find ways to make him more functional at home.The electric wheel chair? Well Sept she had the letter in her hands and has not signed it. The wheel chair Co. has called her 5 times. He needs the chair. MRI results, blood in stool, She must call the NIH to get him in. I emailed them and they denied him. She can get him in with one phone call. DO IT! I want an ortho to read all his x-rays and MRIs, not just a radiologist. I've been fighting for 6 months to get him in to Cleveland Clinic for the MRI in movement. CALL! She says the insurance is bugging her. I don't care. They haven't seen anything yet! This child needs help! Boston Children's inpatient for pain management 3 months the pain Dr has talked about it. DO IT. They have a 6 month waiting list. He's 17 next month, what are we waiting for? CALL! I just might be looking for a new primary tomorrow. This child is not disposable! And I'm not taking it any more! Wish me luck. Cindy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Cindy -- Dylan is so lucky to have you -- give it to them!!!!!!!!! Best of luck -- Patti I have my battle gear on! I have had enough and I am fighting mad. This passing my child around like a hand me down nobody wants, is over. I swear if something doesn't come of tomorrows appointment s--t will hit the fan. I thought I had a half hour block with the Dr tomorrow. Now I find out I have an hour. Great, I'll need it. Talk time. Just me and her. Dylan is not going. I have a list of discussion that is very long, and we will talk. Not about one or two issues but all. He needs a therapeutic bed, OT to come to the house to find ways to make him more functional at home.The electric wheel chair? Well Sept she had the letter in her hands and has not signed it. The wheel chair Co. has called her 5 times. He needs the chair. MRI results, blood in stool, She must call the NIH to get him in. I emailed them and they denied him. She can get him in with one phone call. DO IT! I want an ortho to read all his x-rays and MRIs, not just a radiologist. I've been fighting for 6 months to get him in to Cleveland Clinic for the MRI in movement. CALL! She says the insurance is bugging her. I don't care. They haven't seen anything yet! This child needs help! Boston Children's inpatient for pain management 3 months the pain Dr has talked about it. DO IT. They have a 6 month waiting list. He's 17 next month, what are we waiting for? CALL! I just might be looking for a new primary tomorrow. This child is not disposable! And I'm not taking it any more! Wish me luck. Cindy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Thanks Lana and all, I am ready like I have never been ready before. If I fail, I fail my son. That is not an option. I want every thing in place to get boy some help. The Drs and the medical community is part of the picture. Mike teaching me what he has to offer is another part. And I can only hope a bigger part. But that again will depend on me and my ability to open up and continue what Mike teaches me. I am losing hope in the Drs. Dylan already has. But we still need some of what they can offer. I feel like I am a cross road. Now or never, for this child to get a life back. Another year of waiting is not an option. He will never have a chance to be an independent person. The buck stops here. No more treating my child like a case that nobody wants to handle. I am mad, and I am ready to fight. I will see tomorrow just how strong I am. Cindy C Re: I have my battle gear on! YOU GO GIRL!!!!! We all should be so lucky to have someone on our side like you, who is willing to go to the ends of the earth to get help for a loved one! You have my admiration, and you and Dylan both have my prayers! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Thanks Lana and all, I am ready like I have never been ready before. If I fail, I fail my son. That is not an option. I want every thing in place to get boy some help. The Drs and the medical community is part of the picture. Mike teaching me what he has to offer is another part. And I can only hope a bigger part. But that again will depend on me and my ability to open up and continue what Mike teaches me. I am losing hope in the Drs. Dylan already has. But we still need some of what they can offer. I feel like I am a cross road. Now or never, for this child to get a life back. Another year of waiting is not an option. He will never have a chance to be an independent person. The buck stops here. No more treating my child like a case that nobody wants to handle. I am mad, and I am ready to fight. I will see tomorrow just how strong I am. Cindy C Re: I have my battle gear on! YOU GO GIRL!!!!! We all should be so lucky to have someone on our side like you, who is willing to go to the ends of the earth to get help for a loved one! You have my admiration, and you and Dylan both have my prayers! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Thanks Lana and all, I am ready like I have never been ready before. If I fail, I fail my son. That is not an option. I want every thing in place to get boy some help. The Drs and the medical community is part of the picture. Mike teaching me what he has to offer is another part. And I can only hope a bigger part. But that again will depend on me and my ability to open up and continue what Mike teaches me. I am losing hope in the Drs. Dylan already has. But we still need some of what they can offer. I feel like I am a cross road. Now or never, for this child to get a life back. Another year of waiting is not an option. He will never have a chance to be an independent person. The buck stops here. No more treating my child like a case that nobody wants to handle. I am mad, and I am ready to fight. I will see tomorrow just how strong I am. Cindy C Re: I have my battle gear on! YOU GO GIRL!!!!! We all should be so lucky to have someone on our side like you, who is willing to go to the ends of the earth to get help for a loved one! You have my admiration, and you and Dylan both have my prayers! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Best of luck tomorrow Cindy. You will be in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Best of luck tomorrow Cindy. You will be in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Best of luck tomorrow Cindy. You will be in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Cindy You go girl.....your children are always priority one!!! Betty I have my battle gear on! > I have had enough and I am fighting mad. This passing my child around like a hand me down nobody wants, is over. I swear if something doesn't come of tomorrows appointment s--t will hit the fan. I thought I had a half hour block with the Dr tomorrow. Now I find out I have an hour. Great, I'll need it. Talk time. Just me and her. Dylan is not going. I have a list of discussion that is very long, and we will talk. Not about one or two issues but all. He needs a therapeutic bed, OT to come to the house to find ways to make him more functional at home.The electric wheel chair? Well Sept she had the letter in her hands and has not signed it. The wheel chair Co. has called her 5 times. He needs the chair. MRI results, blood in stool, She must call the NIH to get him in. I emailed them and they denied him. She can get him in with one phone call. DO IT! I want an ortho to read all his x-rays and MRIs, not just a radiologist. I've been fighting for 6 months to get him in to Cleveland Clinic > I just might be looking for a new primary tomorrow. This child is not disposable! And I'm not taking it any more! Wish me luck. Cindy C. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Cindy You go girl.....your children are always priority one!!! Betty I have my battle gear on! > I have had enough and I am fighting mad. This passing my child around like a hand me down nobody wants, is over. I swear if something doesn't come of tomorrows appointment s--t will hit the fan. I thought I had a half hour block with the Dr tomorrow. Now I find out I have an hour. Great, I'll need it. Talk time. Just me and her. Dylan is not going. I have a list of discussion that is very long, and we will talk. Not about one or two issues but all. He needs a therapeutic bed, OT to come to the house to find ways to make him more functional at home.The electric wheel chair? Well Sept she had the letter in her hands and has not signed it. The wheel chair Co. has called her 5 times. He needs the chair. MRI results, blood in stool, She must call the NIH to get him in. I emailed them and they denied him. She can get him in with one phone call. DO IT! I want an ortho to read all his x-rays and MRIs, not just a radiologist. I've been fighting for 6 months to get him in to Cleveland Clinic > I just might be looking for a new primary tomorrow. This child is not disposable! And I'm not taking it any more! Wish me luck. Cindy C. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Cindy You go girl.....your children are always priority one!!! Betty I have my battle gear on! > I have had enough and I am fighting mad. This passing my child around like a hand me down nobody wants, is over. I swear if something doesn't come of tomorrows appointment s--t will hit the fan. I thought I had a half hour block with the Dr tomorrow. Now I find out I have an hour. Great, I'll need it. Talk time. Just me and her. Dylan is not going. I have a list of discussion that is very long, and we will talk. Not about one or two issues but all. He needs a therapeutic bed, OT to come to the house to find ways to make him more functional at home.The electric wheel chair? Well Sept she had the letter in her hands and has not signed it. The wheel chair Co. has called her 5 times. He needs the chair. MRI results, blood in stool, She must call the NIH to get him in. I emailed them and they denied him. She can get him in with one phone call. DO IT! I want an ortho to read all his x-rays and MRIs, not just a radiologist. I've been fighting for 6 months to get him in to Cleveland Clinic > I just might be looking for a new primary tomorrow. This child is not disposable! And I'm not taking it any more! Wish me luck. Cindy C. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 " I just might be looking for a new primary tomorrow. This child is not disposable! And I'm not taking it any more! Wish me luck. Cindy C. " I have my battle gear on! Hey Cindy, even though I don't personally know you, you sound very powerful and to be true, you inspire me very much!!! Keep on doing that. I also wand to tell you and all the " moms " in this list that you are doing a great job, I'm sure that no one else knows better of what is good or not for a child as his/her mom knows!!! I wish you best of luck. Love Tia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2004 Report Share Posted January 8, 2004 " I just might be looking for a new primary tomorrow. This child is not disposable! And I'm not taking it any more! Wish me luck. Cindy C. " I have my battle gear on! Hey Cindy, even though I don't personally know you, you sound very powerful and to be true, you inspire me very much!!! Keep on doing that. I also wand to tell you and all the " moms " in this list that you are doing a great job, I'm sure that no one else knows better of what is good or not for a child as his/her mom knows!!! I wish you best of luck. Love Tia Quote Link to comment Share on other sites More sharing options...
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